Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities.  We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

Two of The Arc’s Programs to Receive Prestigious Zero Project Awards

The Arc of the United States is pleased to announce two of its programs, Wings for Autism®/Wings for All® and the National Center on Criminal Justice and Disability (NCCJD)’s Pathways to Justice®, have been named 2019 Zero Project Awardees. The Zero Project is an initiative of the Essl Foundation that recognizes and provides a platform for the world’s most innovative and effective solutions to problems faced by people with disabilities around the world. The Arc’s programs are being recognized this year for outstanding contributions towards promoting independent living and political participation, the 2019 Zero Project Awards’ themes.

“The Arc of the United States has long fought to ensure that people with intellectual and developmental disabilities (I/DD) are included in all aspects of society, and that the civil rights of people with I/DD are respected in every context,” said Peter Berns, CEO of The Arc, “We are proud that Wings for Autism/Wings for All and NCCJD’s Pathways to Justice will be recognized as Zero Project awardees this year.”

Pathways to Justice and Wings for Autism are among 76 policies and practices selected by an international group of 3,000 experts who take part in a multi-round voting and selection process. The Arc’s CEO Peter Berns as well as leadership from the two recognized programs will accept the award in Vienna, Austria in February.

Since 2013, NCCJD has endeavored to improve the criminal justice system’s response to victims, witnesses, suspects, defendants, and prisoners with I/DD. The Center’s signature program, Pathways to Justice, offers specialized training and support to develop local, multidisciplinary Disability Response Teams composed of criminal justice and disability leaders, including self-advocates, to improve local justice systems. NCCJD has trained over 5,000 justice professionals in 12 different states since 2015.

“Societies can’t be inclusive without equal access to justice for ALL, including people with disabilities. Pathways to Justice is revolutionizing the way the criminal justice system sees and interacts with people with developmental disabilities, laying the groundwork for inclusive justice to take root and flourish across the country,” said Leigh Ann Davis, Director of NCCJD.

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism/Wings for All is an airport “rehearsal” program created to alleviate some of the stress that individuals with I/DD and their families experience when traveling by air. The program also provides vital training and educational resources on disability competency to airport, airline, and Transportation Security Administration (TSA) staff and volunteers.

From 2014 to 2018, Wings for Autism has held over 130 trainings in almost 60 airports throughout the United States and has supported more than 18,000 people with autism and other disabilities, as well as their families. Additionally, the program has trained more than 1,800 aviation professionals in disability competency and inclusion.

“The Wings for Autism/Wings for All program has successfully helped thousands of individuals with disabilities and their families enjoy the basic right to travel and live independently. Simultaneously, we’ve supported aviation professionals across the country to create safe and inclusive spaces in airports to better accommodate travelers with disabilities. We are honored to be in the company of so many other great organizations who are also addressing independent living issues on an individual and systemic level as well,” said Kerry Mauger, Program Manager of Wings for Autism.

The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (I/DD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked.

“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.

“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.

The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with I/DD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.

The Arc Responds to Final Passage of the Farm Bill

Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

Our Hearts Are Heavy: A Statement on the Tree of Life Synagogue Shooting

A statement from The Arc of Greater Pittsburgh, known as ACHIEVA, on the shooting at Tree of Life Synagogue this weekend. Two of their clients, Cecil and David Rosenthal were victims of the attack.

On behalf of the Board of Directors and Staff of The Arc, we offer our most heartfelt sympathy to the entire ACHIEVA family on the tragic loss of Cecil and David Rosenthal.

The ACHIEVA family is devastated at the loss of two well-respected members of our community. Two extraordinary men, brothers Cecil and David Rosenthal, were victims of the tragedy at the Tree of Life Synagogue.

Cecil and David had a love for life and for those around them. As long-standing recipients of ACHIEVA’s residential and employment services, they were as much a part of the ACHIEVA family as they were their beloved neighborhood of Squirrel Hill.

They loved life. They loved their community. They spent a lot of time at the Tree of Life, never missing a Saturday.  “If they were here they would tell you that is where they were supposed to be,” said Chris Schopf, Vice President, Residential Supports, ACHIEVA.

Chris added, “Cecil’s laugh was infectious. David was so kind and had such a gentle spirit. Together, they looked out for one another. They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

Our collective hearts are heavy with sympathy to the Rosenthal family, and to all who were affected by the tragedy at Tree of Life.

The Arc Responds to Appointment of Judge Kavanaugh to the US Supreme Court

 

Today, The Arc responded to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. In August, The Arc came out in opposition to Judge Kavanaugh’s appointment to the highest court based on his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

The Arc has not publicly opposed a nominee to the Supreme Court in 30 years, since 1987 when Judge Robert Bork was nominated by President Ronald Reagan. When Judge Gorsuch was nominated to the highest court, The Arc did a thorough analysis of his record and decided to not oppose his appointment. The Arc solely takes positions based on the core values, mission statement, position statements, and public policy agenda for the organization.

“The Arc is disappointed in the Senate’s confirmation of Judge Kavanaugh, this is a devastating blow to disability and civil rights in our country. After a thorough analysis of Judge Kavanaugh’s record we chose to oppose his appointment and activate our grassroots network. Our organization was founded to promote and protect the human rights of people with intellectual and developmental disabilities. We couldn’t sit by idly knowing that Judge Kavanaugh has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“We believe Judge Kavanaugh’s appointment poses a threat to the civil rights of millions of individuals with intellectual and developmental disabilities and their families. It is shocking that so many Senators ignored the gaps in Judge Kavanaugh’s knowledge and understanding of the value and perspectives of people with intellectual disability. Even more disheartening is those Senators who ignored the pleas of their constituents with disabilities who called on them to oppose Judge Kavanaugh’s appointment. We appreciate those who stood up for their constituents, their support did not go unnoticed. We remain united with our colleagues across the disability and civil rights communities and will continue our advocacy to support the values we hold dear as an organization,” said Peter Berns, CEO of The Arc.

MediSked and The Arc Release the 2018 Disability Data Digest

Building on the joint 2015 I/DD Data Digest, MediSked and The Arc of the United States are proud to announce the release of the 2018 Disability Data Digest, a compilation of the latest statistics from the disability field, displayed in an easy to read infographic format.

In the age of information, it can be difficult to discern what data is reliable, relevant, timely, and accurate. This resource provides a snapshot of today’s disability community and highlights the areas in which progress has been made toward achieving parity in access to opportunity and basic human rights, while also delineating the many challenges that still face individuals with I/DD in striving for inclusion and equality.

The report includes detailed statistics about the following topic areas:

  • Population and Demographics
  • Socio-Economic Profile
  • Employment
  • Health
  • Housing
  • Independence and Decision-Making
  • Living in the Community
  • Long Term Supports and Services
  • Direct Support Professional Crisis
  • Family Caregiving and Natural Supports
  • Disability and the Justice System

We’ve included a fillable State & Local Advocacy Data Toolkit that is linked to resources and databases which contain state-specific data to support local-level advocacy campaigns. Additionally, we have made each of the individual infographics from the Data Digest available for use, with proper citations. You can utilize these resources to identify vital statistics in your state and community to fuel advocacy efforts.

Click here to download the 2018 Disability Data Digest.

The Arc Opposes Appointment of Judge Kavanaugh to the US Supreme Court

Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

The Arc Condemns Family Separations at U.S.-Mexico Border; Calls on Congress to Act

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border.

“The Arc stands with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc. “The notion of uniformed, federal border protection agents forcibly separating parents from their children is outrageous. Family separations are extremely traumatizing and damaging to children, and none are more affected than children with disabilities, who rely on their loved ones for care, security, and support.”

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc’s Berns further noted: “The Arc condemns the cruel and inhumane immigration practices which the Trump Administration has stated are being carried out in accordance with existing immigration policies and laws. However, this explanation rings hollow. Nothing in the law requires the children to be ripped away from their families. This is, quite simply, a choice that has been made by the Administration which is both punitive and contrary to basic human decency.

“How many children have already had the protection, security, and love of their parents stripped away, and how many more face the same fate? As a nation founded by immigrants, we and our elected representatives at the state and federal levels should be outraged by this practice. We call upon President Trump to immediately halt these cruel practices, and we call upon Congress to take action to ensure that such Administrative practices are permanently prohibited.”